¿was Is Treacher Collins Syndrome?
#autism Treacher Collins syndrome refers to a congenital genetic disorder that affects chromosome 5, causing very peculiar craniofacial deformations. Babies born with this affectation are usually born without cheekbones, with microtia (without one or both ears), the jaw does not grow, the pharynx is very narrow and there are also occasions that are born with the palate open.
These complications lead to eye problems, due to dryness and ulcers in the cornea, also hearing (deafness), digestive problems (they can not eat well) and finally respiratory (apneas).
People affected by this syndrome have problems in four of the five senses, which makes it essential to have professionals specialists in very specific fields related to this pathology. As they may already be: Ophthalmologists, speech pathologists, speech therapists, dentists, neurosurgeons or specialists in ears, nose and throat.
Cases a bullying
This harsh affectation not only causes physical problems, but the collective lives a difficult reality full of operations and in many cases unnecessary bullying among children, as shown in the film starring Julia Roberts: “Extraordinary".
The film completely naked society's cruel and harshest look at people with this disease, while it also makes a focus on the harsh surgeries that these people must go through to improve their quality of life.
August, the protagonist of the film, is subjected to more than 27 interventions, wearing a helmet even to go to school so that the other boys do not see his face. This is the harsh reality that children who suffer from this peculiar disease, where they have to endure bullying and the different look of a complicated society.
Jono Lancaster, the living image of overcoming
Jono suffers from Treacher Collins syndrome and is dedicated to traveling the world supporting people with Treacher Collins syndrome. Jono, is a clear example of overcoming and an authentic inspiration for all those affected who see in him a real reference.
As a child Jono was given up for adoption by his biological parents, for the mere fact of being different, being adopted by a family who gave everything for him since they saw him in the center. He says he had a very bad time when he was a kid, but today he feels very proud to be the way he is.
Jono is a very altruistic person who has come to Australia to meet Zack, a two-year-old who suffers from the same genetic disorder. “I wish someone similar to me would have visited her when I was a child. Hope she would have said to me, “You are able to do many things," says Jono recalling his childhood.
Treacher Collins in Spain
Currently, it is estimated that in Spain two out of every 100,000 births may occur with this syndrome, this congenital malformation may occur by a genetic mutation during pregnancy or inherited from parents to children.
The case of Zaira was one of the most important impacts at the national level. The 15-year-old Pamplona reported the harassment she suffered from the facial malformations she was born with. “According to them, I was different and they said that the syndrome I have was contagious," she explained.
International Day of Treacher Collins Syndrome
El 28 de mayo se celebra el International Day of Treacher Collins Syndrome, una enfermedad rara que conviene saber y en su día tomamos conciencia de ello.
This case makes us see how the film 'Wonder', which premiered at the end of 2017, is an awareness exercise very close to what those affected live in real life.
The film, in which Julia Roberts appears, makes us see how society crushes those who are different by their physical appearance, waving consciences to fight for a world where we are all equal.
www.tododusca.com /what-en-the-treacher-collins syndrome-
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The Original Enrique
4 years ago
This is a terrible disease! 😢
1
Meredith✨
4 years ago
A mí me encantó la película de Wonder fue muy inspiradora.
1
ravena69
4 years ago
Gracias por la informacion. Desconocia esta condición.
1
Silvia
4 years ago
Que linda película
1
MAGALY
4 years ago
La sociedad aún no está preparada para compartir con niños especiales
1
ELINA RICKURA
4 years ago
Muy buen tema. La pelicula es genial para tener presente y aprender.👍
1
Maria
4 years ago
aun nos falta por aprender sobre el autismo
1
Rudy Siedlecki 🌳
4 years ago
Vreselijk voor het kind en de ouders.
1
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